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Family functioning and caring for a child with acquired brain injury: a systematic review and thematic analysis

Daniëlle P A Bos1,2, Charlotte E Hilberdink3,4, Kirsten C Smeets1

  • 1Psychiatry Department, University Medical Center Utrecht, Utrecht, The Netherlands.

Journal of Pediatric Psychology
|February 11, 2026
PubMed

Insights

Pediatric acquired brain injuries (pABIs) significantly impact family dynamics and emotional well-being. This review introduces the Utrecht Family Support Model to guide clinical care for families navigating the challenges of pABIs.

Area of Science:

  • Pediatric neurology
  • Family psychology
  • Rehabilitation medicine

Background:

  • Pediatric acquired brain injuries (pABIs) profoundly affect children and their families, impacting emotional health, relationships, and daily life.
  • A comprehensive understanding of pABI's impact on family functioning is lacking.
  • Existing research often overlooks the multifaceted psychosocial and practical challenges faced by families.

Purpose of the Study:

  • To systematically review the impact of pediatric acquired brain injuries (pABIs) on family functioning.
  • To develop a conceptual model to guide clinical care and support for affected families.
  • To synthesize current evidence on the psychosocial experiences of families with a child with pABI.

Main Methods:

  • Systematic literature search across seven major databases (CINAHL, Embase, PsycINFO, PubMed, Scopus, Web of Science, PTSDpubs) from January 2013 to November 2024.
  • Inclusion criteria: children (0-18 years) with pABI, focus on family functioning, English language, qualitative or mixed methods. Excluded: concussions, non-peer-reviewed studies.
  • Inductive thematic analysis of 24 included articles, synthesized into the Utrecht Family Support Model for Pediatric Acquired Brain Injury.

Main Results:

  • Twenty-four articles examined moderate-to-severe TBI, brain tumors, stroke, and infections in children.
  • Five key themes emerged: Changing family dynamics, A different reality, The emotional weight, Navigating emotional challenges, and Needing to be heard and held.
  • These themes were integrated into the Utrecht Family Support Model, encompassing caregivers, siblings, and adoptive relatives.

Conclusions:

  • Family functioning after pABI requires consideration of interconnected psychosocial and practical factors.
  • The quality of included studies was predominantly low-to-moderate, impacting reliability and generalizability.
  • The developed conceptual model offers a framework for understanding family dynamics and improving outcomes for children with pABI and their families.
Abstract

Keywords:
acquired brain injuryfamily functioningpediatricssystematic reviewthematic analysis

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